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Might have CLL: Does it come on fast?

Blood Cancers & Disorders | Last Active: Jul 9 8:45am | Replies (22)

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@twodogmom

I was diagnosed in 2021 and my hematologist/oncologist guessed I had probably had it for at least 2-3 years before diagnosis. The FISH (Fluorescence in situ hybridization) and Flow Cytometry can tell you if it is CLL without a biopsy (both are blood tests). I had rising levels of lymphocytes over many years, ran from 4000-7000 for probably 8 years. I had them retest after a month when I had high lymphocytes right before my diagnosis as there are other cause such as infection and illness that can cause high white counts. I am still in the watchful waiting period, have blood drawn every three months and had some CT scans and a PET/CT scan and some lymph node biopsies as needed. All the lymph node biopsies have come back as CLL?SLL. I think the tests I mentioned, FISH and Flow Cytometry are important at diagnosis so you know what you are dealing with. I have mutated IGHV and a single 13Q deletion., both good prognosticators. My doc and PA are pushing me to start Acalabrutnib but I want to wait as I have some swollen lymph nodes but not to the level of "Bulky". I don't have B symptoms. There are some excellent lectures on youtube about the ever-changing, with much hope, landscape of CLL If you are diagnosed, find out as much as you can about the disease and your options. Don't feel rushed to treat as the studies are still in the starting medication early does not improve survival camp. That could change. I am very thankful to have CLL as it is indolent and chronic, two words I never associated with being positive things until this diagnosis. All the best!

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Replies to "I was diagnosed in 2021 and my hematologist/oncologist guessed I had probably had it for at..."

I wanted to explain more about how survival has not been associated with starting treatment early. Once you have a treatment, you can become immune to that treatment and takes it off the table. Each treatment tends to eventually cause some kind of resistance in the form of mutations. With the BTK inhibitors, you take them until they stop working or side effects cause treatment to stop. Other meds such as Venetoclax are for a fixed duration. BTK inhibitors about double the risk of Richter's Transformation, a low risk about 5% lifetime risk goes up to 10% lifetime risk with treatment. Some mutations found by FISH need treatment right away, many are watchful waiting as the first step. But if one doesn't need treatment, every year improved meds and combinations are coming out that may better treat one and with no treatment-induced mutation occur. I have told my doctor I do not want treatment until there is a REAL reason to treat. Others feel differently!